Third time I’m being infused with Rituxan. I was able to change my infusion place back to my home town instead of NYC. Saves at least 3 hours of the day. I got here at 9am and it’s 9:57 IV is just beginning. Why an hour? Well they didn’t get the doctors orders. Now it is a federal holiday today so getting in touch with the doctor wasn’t going to be easy. Her office at Mount Sinai in NYC is closed. The infusion suite I had the last dosage at Mount Sinai in NYC is closed. Nothing like waiting until last minute to tell us we needed this. The amazing part of this is my wonderful neurologist. I emailed her and on her day off she wrote me back. She called the infusion suite and got the orders into them so that I could get the infusion done. Not many doctors would do that. Not many people would do that. She really is something special.
I’ve said this before I have 2 neurologist. I still see the one close to me on Long Island. He treats me symptomatically. He was the doctor that diagnosed me 19 years ago. He knows me well but also has seen me through this disease since the beginning. It’s part loyalty, part comfort and mostly trust. He was also the one who pushed me to see a MS specialist in the city as my MS got worse. He knew I needed the bigger medicines and the bigger doctors. That’s how we got to the NYC neurologist. From the day I met her she was something special. She was due any day with her second child. She was having contractions throughout our entire appointment but never said a word. She had the baby the next day. That’s the kind of doctor she is and I am very grateful for her on my team.
Ok back to rituxan IV. I just completed 10grams of decadron which is steroids. Last time I had a big time side effect to the steroids I can only hope I don’t this time. Now I’m getting Benadryl through the IV. That feels s little like a slow morphine drip. Getting lightheaded and foggy. Feeling slightly loopy. Since I’m a fan of this feeling (when I’m old just give me my morphine pump) and I’m not driving anytime soon, I’m good. Might as well enjoy the moment. However FYI makes your chest tighten a bit this way…if you aren’t prepared (like I wasn’t the first time I got it), it is scary. Ok that’s done, oh well, on to the main attraction. We are up to the rituxan. This takes 4 hours plus. The Benadryl and the steroids are for the infusion side effects. That happened only during my first infusion. I had severe itch ears. Crazy. Second was find. Third is now running into my veins. Wish me luck….